New to this community: Hi guys! So, I have... - Endometriosis UK

Endometriosis UK
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Lofty1589
Lofty1589

Hi guys! So, I have finally been referred for investigation after years of pushing and going to the drs because my periods are so awful - even when I'm not on them! I pretty much have constant pain now which affects me day to day.

One of my best friends had a laparoscopy to remove endo when she was 12, so I had an idea of what endo was. But, it is in recent years that I realised that I potentially have it. I have all the classic symptoms:

- a hell of a lot of pain in my pelvis, back, hips, my thighs

- fatigue/lack of energy: I seldom sleep at the moment so this is a constant thing

- depression - officially diagnosed in May 2018 and it doesn't look like it is going anywhere any time soon

Not to mention all of the nausea and feeling lightheaded every single day regardless of my position - I've been investigated for that for 3 years with no answers so it makes me wonder if it is endo causing my body to be like this...

I have been looking at everyone else's posts and just wondering what sort of support you guys could offer? I have up to an 18 week wait for my referral to gynae which gives me anxiety to be facing the next few periods because they are absolutely awful - I feel like I can barely move a lot of the time when I am on, but I have to continue as if nothing is happening as I can take off time at work. :( I am also greatly considering asking if I can just have a laparoscopy as that is the best way to know for sure if I have endo and remove it if I do - I don't want to have to continue going month to month dreading a week because I feel so awful.

Thank you if you've actually read all that. It certainly feels much better now I've let it out *laughs nervously*

11 Replies
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Massssssive any annnny poasible Endo Ease of encouragement Im able to offer. Wish I really could offer more. You really are doing the best thing by pushing the matter with your specialist. Dont be fobbed off ever. Ive been waiting x10 years to get the emergency referral for now a hysteroscopy. I had to scream bloody all hell at A&E the other week. So glad I have now. Tests next to (hopefully) rule out endometrial cancer. my fingers crossed for you x

Lofty1589
Lofty1589
in reply to Tulip038

Thank you so much. Sorry to hear your journey hasn’t been the best. Here’s hoping it all starts working out for you! X

Tulip038
Tulip038
in reply to Lofty1589

Oooo I'm going to be a tougher un than Ive ever been evvver! 🤗 Thaaaanks x

Hi. As you are in a lot of pain and it is really affecting your life, I would definitely ask for the laparoscopy as soon as possible. Then you will know what you are dealing with and have the best chance of improving your quality of life. The laparoscopy is not nothing, it does need properly recovery etc. But it is manageable (especially compared to what you are regularly having to go through now unfortunately). In the meantime have you involved your GP in trying to manage your pain? It is hard, I’m sorry you are feeling rubbish. It should get better. All the best.

Lofty1589
Lofty1589
in reply to ChloeV

Hi! Thank you for your reply. I’ve been considering the laparoscopy more and more, just so I can know for sure what is going on. The drs just say take paracetamol, which doesn’t hit it, or ibuprofen which I can’t take because of my anti-depressants. I’ve got co-codamol which I use when I have to go to work and can barely move - I do make sure I use it sparingly as I don’t want to be addicted to it. But because of that, it means I am struggling in the ways of pain relief

Canada is sending you some much needed love....

Please try your best to keep fighting the good fight.

We are with you!!!!

Love

William

Lofty1589
Lofty1589
in reply to Willbc

Thank you so much, William. It is certainly needed today x

Hey lofty, lots of teddy warm hugs 🤗. I would recommend you to visit Nancy nook endometriosis education on fb. It’s has vast knowledge on Endo, and excision doctors who do lap and diagnosis in one go for docs worldwide. I hope that leads you to a better place too.

Lofty1589
Lofty1589
in reply to Dakrav

Thank you for your reply! I could certainly use those hugs... 😭 I may just check that out after work. Thank you :)

I am not a doctor, but if you are on the pill maybe try taking it back to back over the next few weeks before your appointment. Most of my horrible pain occurs when I have my period so now that I don't have a period it's a lot better. My gyno recommended I take my pill back to back so it isn't unsafe.

Good luck!!

Thank you for your reply! I asked my doctor if I could do that, but he said that I couldn’t ☹️ I’m back on the start of my next month of pills but I’m still in so much pain

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